Advocacy

We Support Advocacy for Children with Cancer…

And our mission is DIPG/pediatric brain cancer advocacy and research. We support the efforts of the Alliance for Childhood Cancer, The Children’s Cause for Cancer Advocacy, and the legislative efforts of Kids V. Cancer. We have just begun the DIPG ADVOCACY GROUP to support H.Res.69:

Our National DIPG Awareness Resolution is a completely grassroots effort in its message which is representative of the experience and interests of children with cancer and their families, exclusively. We use the example of DIPG to demonstrate for all childhood cancer the urgent need for more research funding to save lives. It was not written to please any other large organization with lobbying power, or government agencies themselves. On behalf of children facing certain death and their families, we insist on beginning a conversation about it at the highest possible levels of advocacy and government, that children and the dying be priorities in our medical research system.

Thirty-One States have acknowledged DIPG Awareness in Legislative and Gubernatorial Proclamations in 2018! see page 4 of pdf

The RACE for Children Act passed both houses of Congress and was signed into Law by the President!

STAR Act: House (H.R.820) Senate (S.292) passed both Chambers and has had a Presidential Signature, funding approved for several programs as of September 2018.

However, the Government Accountability Office investigation into the allocation of funds for pediatric cancer and the research grant process have yet to receive support. This is the part of the previous childhood cancer bill, the Caroline Pryce Walker Conquer Childhood Cancer Act and its subsequent Re-Authorization, which never succeeded. We believe that H.Res.69, which asks for a national conversation about the chronic lack of research funding for kids, will help these bills be fully supported. Unless people know we will continue to fight for the basic rights of our children.

H.Res.69 was introduced to the House Energy and Commerce Committee 1/30/2017, and debuted in previous form H.Res.586 in January of 2016 for Session II of 114th Congress. Let your Representative in Congress know that you want him or her to “co-sponsor” or sign the bill. Here is an information packet with cover-letter and the text of the Resolution for your U.S. House Representative. There is activity in the Senate for a 2019 Resolution; to contact your Senators for their support, use this information packet for the Senate proposal.

We had 31 States this year with May 17 DIPG Awareness Day, demonstrating significant national support.

The Resolution was first introduced as H.Res.586 to the 114th Congress and named the 4th week of May to be “DIPG Awareness Week” in the tradition of California’s first every proclamation for DIPG in 2014, ACR151.

Congressman Steve Knight (R-CA-25) introduced the 2017 National DIPG Awareness Resolution with co-sponsor Jackie Speier (D-CA-14). Congresswoman Speier is a new co-chair of the Congressional Caucus for Childhood Cancer.

Roughly 4% of our NCI budget(and this is in need of an update by NCI or GOA for cancer research benefits pediatric cancer research, even though cancer is the leading cause of death of any disease in children. Jack’s Angels work in helping to create H.Res.69 for DIPG Awareness addresses this issue by asking for more consideration for survival rates and years of life lost with the NCI research grant process. Please help it to pass; no other surviving legislation for childhood cancer has been able to adequately address the lack of research funding for pediatric cancer, and it must needs be addressed. Please support STAR, RACE, 21st Century Cures, Creating Hope, and DIPG Awareness.

HRes.69 , the National DIPG Awareness Resolution does not allocate funds by law but it does do something VERY IMPORTANT that none of the other HR (force-of-law) bills do: it calls for elevated consideration for low-survival rate cancers and years of life lost (our children) with the National Cancer Institute research grant process. It also honors, by designating May 17 as National DIPG Awareness Day, the thousands of children who have perished to DIPG, and brings attention and support to those currently fighting for their lives.

Why is this important? Legislation for childhood cancer has a habit of disappearing, and usually at the point where the bill addresses the issue of, “where’s the money going?”, and the Government Accountability Office. While the STAR Act and other bills asking for important funding for helpful programs are vitally important, nowhere does it say, outright, that our children and very low-survival rate cancers ought to be prioritized. For some reason, this is the big scary thing to say in Washington. Jack’s Angels says, “Just Say It!” DIPG! Does this mean other cancers will have to have more consideration? Of course it does! As they should… Until we are willing to care, to get specific, name the unknown foe and vow to understand it, we will never cure cancer. Saving children certain to die ought to be a priority and the #1 “incentive” without question.

The Research to Accelerate Cures and Equity for Children Act

The Problem:
Children with cancer cannot get access to the most promising and novel cancer drugs available to adults.
• Before new cancer drugs are FDA approved, the drugs are only available through clinical trials to adults and not to children.
• When companies abandon development of drugs for adult cancers, as happens 95% of the time, the opportunity for these drugs to help children disappears.
• After new drugs are FDA approved, pediatric researchers can’t afford to purchase them for clinical studies.
The Solution: The RACE for Children Act
The RACE for Children Act would enable children with cancer to be treated with the most promising new cancer drugs.
Unlike 90% of all new Congressional bills, the RACE for Children is not a new policy. The RACE for Children is merely an update of the Pediatric Research Equity Act (PREA) so that the law catches up with the science.
• PREA requires companies developing drugs for adults to also develop them for children. However, contrary to Congressional intent, PREA has never applied to cancer because children’s cancers occur in different organs than do adult cancers.
• The RACE for Children Act would authorize the FDA to require PREA pediatric studies when a molecular target of an adult cancer drug is relevant to a children’s cancer. The RACE for Children Act would end the orphan exemption for PREA studies. Every newly approved cancer drug has enjoyed this exemption over the past three years.
The RACE for Children Act is a game changer. The RACE for Children Act gives kids with cancers a chance to access the most promising and innovative drugs that are now available to adults.
The RACE for Children Act could give a child one more birthday.
For more information, please contact: Emily Bouck (Sen. Rubio) Emily_Bouck@rubio.senate.gov, Rohini Kosoglu (Sen. Bennet) Rohini_kosoglu@bennet.senate.gov, Austin Carson (Rep. McCaul) Austin.Carson@mail.house.gov, Saul Hernandez (Rep. Hernandez) saul.hernandez@mail.house.gov, Ziky Ababiya (Rep. Van Hollen) Ziky.Ababiya@mail.house.gov. 1 Update: The KIDS Act has been renamed the RACE for Children Act

For updates on the most important news in legislation, visit www.kidsvcancer.org and www.childrenscause.org.

HRes.586: A National Resolution for a DIPG Awareness Week debuts in 2016

After working diligently through 2015 to raise awareness for the need for more consideration of DIPG and low survival-rate childhood cancers, we’re very pleased to announce that House Resolution 586, “Chad and Jack’s Excellent Agreement”, in loving memory of Chad Carr of Michigan and Jack Demeter of California, honors tens of thousands of our children who have heroically faced certain death over recent decades and done so mostly without heralding or fanfare of any kind. The DIPG experience has been for many families isolating, lonely, and emotionally decimating in its uncompromising fatality. Our primary purpose is to help change this for children who have yet to be diagnosed with DIPG in the future and their families.

This Resolution would not exist had it not been for the “Just Say It!” campaign, and two trips to CureFest in Washington DC. As an advocate for children with brain tumors, I cannot stress enough the importance of involving oneself in the collective movement and connecting with others working for the same cause. If you want to advocate for children with cancer, go to CureFest! Participate in the Summit of the Congressional Caucus for Childhood Cancer, and ask to participate in the White House Briefing. Be the voice!!

“JUST SAY IT!” Campaign for a National Day becomes a WEEK

After decades of obscurity, 0% survival rate, feelings of insignificance and agonizing grief at diagnosis for families, and thousands of cumulative deaths, it is time. It’s time for DIPG to come out of the dark. 2015 original press release:PRESS RELEASE

“May light and hope one day replace despair and grief at diagnosis for DIPG children and their families.” –Jack’s Angels Prayer

“JUST SAY IT!” –D. I. P. G. Campaign

Most of the high-profile cases of terminal cancer in the news media in 2015, including Lauren Hill and AJ Peterson, had DIPG; did you know it? DIPG exemplifies the tragedy of childhood cancer in that, DIPG, like most all other childhood cancers, is marginalized as a “rare” or “orphan” disease, although it is responsible for the majority of pediatric brain tumor deaths each year, has no survivors in over 35 years of clinical record, and comes in the regular frequency of 200-300 diagnosed annually. There has been no progress in the survival of pediatric brain tumors in over 40 years, according to the National Brain Tumor Society, and the field is urgently in need of support. With regular frequency, for decades, children have been dying of brain tumors with little being done to research the causes and conditions, with windy arguments made for research investors and numbers, completely inadequate in terms of human value. While we have developed many life-saving therapies for adults, little is done, in comparison, for our world’s most precious commodity: our children.

Help us encourage the President to make an Awareness Proclamation for DIPG! We just had National Hot Dog Day for Heaven’s sake…visit the Petition for more information.

DIPG is almost exclusively pediatric, with the poorest survival rate in over 35 years of clinical record. Brain tumors are the leading cause of cancer-related death in children, yet one of the very least-funded areas of cancer research. When one poses the question as to why no effective therapies have been developed, the answer seems to be consistently that the “numbers” (200-300 per year) aren’t great enough for research investors. Meanwhile, only 4% of our tax dollars allocated for cancer research by the National Cancer Institute are designated for all pediatric research.

Help us to make a commitment to our children with our actions and words; tell your representatives in Congress and the President to make our children with terminal cancer a National Priority.

We support the DIPG Research Fund at Children’s Hospital Los Angeles, our local/regional Children’s Research Institution with a strong neuro-oncology program. This fund is under the direction of Dr. Girish Dhall, Director of the Neural Tumors Program. It is our goal to raise $1M for this fund, and to encourage the formation of such funds at every Children’s Research Institution in the US.

Erin Griffin, the beautiful girl in this video sadly passed away from DIPG September 2014. Dr. Charlie Teo, internationally renown neurosurgeon, expresses that the lack of funding for research is truly the only barrier to our making progress in treating brain tumors:

What is it?

Our beginnings and our MISSION

Our mission is to improve awareness forDIPG, one of the most devastating pediatric malignancies with virtually no survivors, the urgent need for research, and to support the afflicted. The foundation’s beginnings were inspired by the love and support our local communities of Agua Dulce, Acton, and Santa Clarita, California, from the diagnosis 10/28/2011, of James-William “Jack” Demeter, with Diffuse Intrinsic Pontine Glioma, or DIPG. We are committed to affecting change in the experience of a family receiving a DIPG diagnosis for their beloved child, that there be active research and hope for survival.

Our happiest accomplishment of 2013 is the “for Jack” DIPG research fund at Children’s Hospital Los Angeles, and thus our campaign to ‘Count to a Million!’ –continues, as does our desire to see such a research fund at every major children’s research institution neuro-oncology clinic in the US. Please join us in our attempt to be supportive to those families and dear children who are diagnosed with DIPG, in their walk down this road. Jack lived 9 months past his diagnosis date, the median survival time for DIPG. Please consult the “About DIPG” page for more information about this illness.

Donating to Jack’s Angels supports DIPG research at Children’s Hospital Los Angeles, programs like Project Angel Box and our community programs and events for children. Donations specified for a purpose will be honored. Currently we have no sponsors and are solely dependent upon community and volunteer support. It costs money for any business to survive; we appreciate support for our organization’s activities. It makes fundraising for research and outreach to the afflicted possible. Thank you for your consideration, and your generosity.

“We were told, ‘…there’s nothing we can do; we don’t know the cause, and we can only provide temporary relief with radiation; no chemotherapies have changed the terminal outcome…’, and yet, no one was taking data from us. No samples, no testing, no forms, no nothing. We got an enormous book from CureSearch of forms, that I think was standard for any child diagnosed at the hospital with some form of cancer, but nothing that addressed the urgent need for research, real research… This is an UNACCEPTABLE REALITY. All of our research hospitals across the country ought to have data programs for the families to have the opportunity to contribute their life history/lifestyle/genetic information; we could be actively looking for the “non-existent” common denominators of DIPG. All research centers ought to have the advanced genetic testing/data-collaboration capability. We have the technology; God knows the doctors would like to be able to do more. And as more and more families suffer from DIPG, it won’t be long before the status quo’s unacceptability is too strong in our collective consciousness to ignore. This is now my personal mission.” –J. Demeter, Jack’s mom